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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)Comment receiving replies
Hi all. I don't know what I have from day to day. First diagnosed with GBS, sought out another neurologist and second diagnosis was CIDP. After test and seeking a third opinion, was diagnosed with POEMS. Has anyone been familiar with POEMS. I had a tumor removed in January 2017 then followed up with radiation treatments. I've been on Prednisone which helped, I didn't have all the side effects of Prednisone, weight gain. puffy face, now I'm weaning off the Prednisone, still having IVIG treatments for the CIDP diagnosis, and cautiously spacing them further apart. i suspect if I don't have problems, this will be discontinued sometime in the coming months. I was hard to diagnose properly and just pray a lot, because I am a lot better than I was in October of 2016. I was on a walker now I walk freely with the help of AFOs for drop foot in both feet. I drive now and take water exericse 4 days a week. I so interested in having a support group to talk to with this neuropathy. My hands were affected and now are better, not normal, legs either, but so much better than in the past, so I am grateful for the strides I make and can now do housework, play in my flowerbeds, not falling anyone..just enjoying what accomplishments I have made. Please respond with your experiences, what helps, Thanks for sharing with me.
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Hi bburleson1, it sounds like you are telling my story. I've been dealing with this for 3 years now. First it was MGUS with PN. I was started on plasma exchange for 6 months with a break to remove my tunnel dialysis catheter. After 3 months I was already headed down hill. I was given heavy does of steroids to see if that helped. Nice try but nothing. I tried 3 rounds of Ritoxin that didn't help so I was back on PE while they tried to figure out what my diagnosis was. One Dr said it was CIDP and one Dr said it was POEMS. More test, bone marrow biopsy, fat aspirate, blood test, EMG, EEG, seral nerve biopsy all that were going to determine what I had. And all the test came back that I had indicators for CIDP and POEMS. I started on cytonixin and after 2 rounds of that I went walking to being unable to use my legs or arms. I called my Mayo doctor who sent me to Mayo-Methodist hospital where I was started with 3 days of PE followed by 5 days of IVIG. After 8 days in the hospital and being labeled a quadriplegic I start to get some feeling in my hands so I was sent to Mayo- St Mary hospital for rehabilitation. After 10 days of physical and occupation therapy I walked out of there using a walker and AFO's. It's been a year since then and now I'm doing 45grams of IVIG every 10 days and I'm back to 90% normal. I don't have any side effects from the IVIG so I'll continue until????
Bruce